End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBHconference in October 2017 includes over 400 workshops, panels, andpapers in bioethics and the health humanities. Here are ones that pertainto end-of-life issues.

THURSDAY, OCTOBER 19

THU 1:30 pm: End-of-Life Care and Decision-Making in the ICU - LimitedEnglish Proficiency as a Predictor of Disparities (Amelia Barwise)

Importance: Navigating choices in predominantly English-speaking care settingscan present practical and ethical challenges for patients with limited Englishproficiency (LEP). Decision-making in the ICU is especially difficult and maybe associated with disparities in health care utilization and outcomes in criticalcare.

Objective: To determine if code status, advance directives, decisions to limitlife support, and end-of-life decision-making were different for ICU patientswith LEP compared to English-proficient patients.

Results: When adjusted for severity of illness, age, sex, education, andinsurance status, patients with LEP were less likely to change their codestatus from full code to do not resuscitate (DNR) during ICU admission (OR,0.62; 95% CI, 0.46-0.82; p

Conclusion: Patients with LEP had significant differences and disparities inend-of-life decision-making. Interventions to facilitate informeddecision-making for those with LEP is a crucial component of care for thisgroup.

THU 1:30 pm: �But She�ll Die if You Don�t!�: Understanding andCommunicating Risks at the End of Life (Janet Malek)

Clinicians sometimes decline to offer interventions even if their refusal willresult in an earlier death for their patients. For example, a nephrologist maydecide against initiating hemodialysis despite a patient�s rising creatininelevels if death is expected within weeks even with dialysis. Althoughclinicians can describe their reasons for not offering an intervention (oftenrelated to overall prognosis, suffering, and mental status) toward the end oflife, their reasoning has not been explored in detail or described in a nuancedway. Anecdotal experience as well as published scholarship suggests thatclinicians decline treatment if �the risks outweigh the benefits.� This facileexplanation does not adequately address concerns of a family member who wantsto give their loved one every possible chance, arguing, �But she�ll die if youdon�t! What do we have to lose?�

In an attempt to bridge this impasse often encountered by clinical ethicsconsultants and critical care physicians, we conducted interviews withphysicians (intensivists, oncologists, surgeons, and nephrologists) aboutsituations in which they refused to offer CPR, chemotherapy, surgery, anddialysis. Our goal was to understand physicians� perceptions of risks andbenefits at the end of life and how they communicated those risks and benefitsto patients and their families. This presentation describes clinicians� reasonsfor declining to offer intervention when the end of life is near and offersuggestions for ways to describe this decision effectively to patients�families.

In February of 2015 the Supreme Court of Canada declared unconstitutionalsection 241 of Canada�s Criminal Code that prohibited either assisted suicideand called on the federal government to introduce new legislation to permitmedical aid in dying (MAiD). This new legislation was approved by Parliament inJune of 2016.

Since then provincial governments, professional regulatory bodies and regionalhealth authorities across the country have been scrambling to adjust internalpolicies and procedures to ensure compliance with the law, even as requests forthis new �medical service� have been coming in. At the time of this writingmore than 800 individuals from across the country are reported to have receivedMAiD.

Developing policies, and procedures and responding torequests has required a substantial investment of resources in an already overtaxed health care system. Put otherwise, the relatively small percentage ofterminally ill patients who request MAiD are consuming an inordinate amount ofhealth care resources to receive a �medical service� to which the Supreme Courthas declared they are entitled. In this paper I discuss how this new law isunjustly shifting Canada�s priorities with regard to end-of-life care includingan unjust allocation of resources. Indeed, given the manner in which thisservice is being introduced and how the criteria for it are being expanded, itcould be argued that Canada is in danger of medicalizing suicide.

THU 2:45 pm: Robbed of Life: A Thomistic Position on Terminal Sedation(Jessica Adkins)

Terminal sedation, broadly understood, is the act of administering high dosesof sedative medicine to a terminally ill patient with the intent of relievingsuffering. Death must never be intended, but a hastened death can beforeseeable. Many arguments in support of terminal sedation rely on Aquinas�Doctrine of Double Effect (DDE). Such arguments say: the act of relievingsuffering is not an intrinsically morally evil action; death is not the causeof the relief of suffering but rather the use of medication; and, foreseeablepossible death is an unintended consequence of terminal sedation, but it is aconsequence tolerated because the relief of suffering is of equal or greatervalue to offset that negative consequence of a hastened death. The DDE argumentappears satisfying since it not only justifies terminal sedation but it alsodifferentiates the act from euthanasia and physician-assisted death.However, Iam not convinced applying the DDE is enough to show the moral permissibility ofterminal sedation if one actually wants to take a Thomistic approach to theissue. The task of this paper is to approach terminal sedation from a Thomisticposition but to avoid the typical reliance on the DDE. Instead, I wish to focuson Aquinas� thoughts on justice, robbery, due care, and justice. I concludethat a Thomistic position would not find acts of terminal sedation as morallypermissible, and that merely defending terminal sedation with DDE argument isnot enough to offer a robust Thomistic argument on the matter.

THU 2:45 pm: Do Nurse Practitioners Have a Role in Physician Assisted Death?(Liz Stokes)

As the debate on assisted death continues, there are many physicians who refuseto participate, leaving the opportunity for participation by other members ofthe health care team, such as nurse practitioners. This presentation willdiscuss the historical role of nurses around the world in assisted death andthe challenges that nurses face in caring for patients at the end of life. Thediscussion will be cased-based and identify the ethical and legal challengesthat nurses may face with patients who have requested assistance in dying.Several nursing organizations and several professional Codes of Ethicsexpressly prohibit a nurse�s involvement in hastening a patient�s death becauseit is against the ethical traditions and goals of the profession, and itscovenant with society. The International Council for Nurses is silent on thespecific role of the nurse in assisted death, but advocates for a palliativecare approach aimed to reduce suffering for patients at the end of life.

Canada is the first country in the world to allow nurse practitioners, ratherthan physicians, to administer lethal medication in assisted death. There willbe an interactive discussion of the role of the nurse in assisted death and theramifications of this significant shift in policy. The discussion will concludewith practical methods for nurses and nurse practitioners to utilize in caringfor patients who have requested assisted death, including refusal,conscientious objection and withdrawal of care.

THU 2:45 pm: Medical Aid in Dying: Who Should Be Eligible (CatherineRodrigue)

Since 2015, legislation allows medical aid in dying (MAD) in Quebec, Canada.The eligibility criteria include age of majority, end-of-life prognosis,suffering from a serious, incurable illness at an advanced state ofirreversible decline, and experiencing constant and unbearable physical orpsychological suffering. In 2016, a federal bill established similar criteriato those in effect in Quebec, however there are some important distinctions.For example, the federal criteria refer to being at a point where natural deathhas become reasonably foreseeable rather than at end-of-life. The definition ofeligible medical conditions is also more restrictive in Quebec. Thus many areexcluded in accordance with the provincial criteria, despite the broader scopeset federally. For example, those suffering from degenerative diseases withouta definite end-of-life prognosis, and those with Alzheimer-type dementia makingan advanced request for MAD applicable when advanced stage is reached (can nolonger consent) are not currently eligible. The media have recently reported ontwo such stories: one was killed by her husband wanting to abide by his wife�swishes, and the other traveled to Switzerland to access euthanasia. The provincialgovernment has now shown a willingness to open up discussions on eligibility toMAD. Broadening the criteria would support the autonomy and respect wishes of alarger number of people. However, it will also raise challenges considering theconflicting values of many, including healthcare professionals. Thispresentation aims to present the legal framework for MAD, and then to analyzethe ethical issues related to broadening the criteria.

THU 2:45 pm: Pathways to Convergence: Sharing a Process that Aimed to Examinethe Diverse Perspectives of Catholics on Advance Care Planning and PalliativeCare in the United States (Robert Barnet, John Carney, MatthewPjecha, Carol Taylor)

Pew Charitable Trusts recently funded a project to examine views among Catholicsin the U.S. regarding end-of-life, palliative care and advance care planning.Center for Practical Bioethics (CPB) served as coordinator for the project. Asix-member steering group representing ecclesial, Catholic Health, and ethicalinterests, along with CPB (a secular organization) invited three groups ofeight Catholics from different disciplines and perspectives to captureconservative and progressive themes within American society and among practicesettings. Roles and responsibilities within those realms were prominentlyfeatured in deliberations with goal of clarifying areas of divergence,convergence and possible paths forward. The groups examined: - Socialresponsibility derived from tradition (how the Church presents itself andspeaks in the public square and what informs this presence) - Covenant andcontract (roles of free and informed consent in advance care planning anddecision-making between patients and providers) - Shared decision making(Church teaching that informs specific decisions faced in goals of careconversations and interdisciplinary care planning for palliative carepatients)Identified as Pathways to Convergence the groups aspired to identifycommon values and principles and report on the results following a convening.Presenters will explore how ethicists can use the processes, methods andfindings of this group when workings with patients for whom faith tradition mayplay an important role and among providers, and others who share differentperspectives on end of life to facilitate optimal advance care planning andpalliative care.

When faced with the impending death ofa child, parents will often exhibit wishful thinking and make demands forpotentially inappropriate treatment. Behind these well-intentioned demands canbe different forms of hope -- such as hope that he child will beat the odds,that a miracle will occur, or that divine forces will reward the parents' fightfor life. It is widely acknowledged in the United States that physicians arenot ethically obligated to provide futile or inappropriate treatment. But evenif they are not obligated to provide this treatment, is it ever ethicallypermissible to provide it? Is it ever ethically prohibited? These ethicalnuances are explored in two clinical cases, one from neonatology and one frompediatrics. The cases share many feature, but I argue that they call fordifferent recommendations from the clinical ethics consultant. In one case, themother's worldview was at stake, and she argued that she and her infant wouldsuffer severe metaphysical harm if the medical team withdrew life-sustainingtreatments. In the other case, the father's beliefs were closer tosuperstitions and unrealistic optimism, and he argued that the medical testsand physicians were all in error about his son's diagnosis and prognosis. Ishow that the principle of liberal neutrality, a concept from politicalphilosophy, is applicable in clinical contexts and helpful for distinguishingthese cases. I offer a typology of faith-based requests, showing how theserequests can vary in their moral pull when the principle of liberal neutralityis applied

FRI 8:00 am: Community Neonatal Palliative Care: Preparing for Death orHelping to Support Life? (Paul Mann)

Palliative care specialists areincreasingly called upon in neonatal intensive care units to optimize clinicaloutcomes for infants with congenital malformations, genetic anomalies and/orborn extremely premature. In the inpatient setting, palliative care consultantsenhance communication with families, providing prognostic and psychosocialsupport while alleviating suffering through advanced management approaches.Additionally, for infants who have achieved adequate clinical stability orwhose families have elected for comfort care, palliative care is instrumentalin coordinating transitions to home.Once at home, however, many families areconfronted with the ambiguity of an uncertain clinical trajectory. There arefew standardized approaches for ongoing care of medically complex infants, andtime and experience limitations may preclude primary care providers fromproviding optimal care. Parents who continue conventional medical therapiesmust skillfully navigate a labyrinth of subspecialist visits and can finddifficulties determining who has ultimate ownership for the medications andtechnologies that their infant is dependent upon. Other parents who werecounseled that death was imminent may have no formal plan for follow-up withany medical provider. Some of those parents eventually elect to transition backto conventional medical interventions as the infant lives longer or does betterthan anticipated.In order to enhance outcomes for such medically complexinfants and meet the needs of their families, a new transitional care approachis needed. This paper proposes a medical home led by palliative carespecialists and centered on coordinating multidisciplinary care to support theongoing life, and quality of life, of the infant and family.

In the past decades, a shared approachhas become the ideal for neonatal end-of-life decision-making. We conducted anempirical study to explore involvement of parents of extreme preterm infants indecision-making through participant observation and twenty in-depth interviewsin a level III NICU in Switzerland. In the face of the ideal of shareddecision-making, our study shows that parents were not involved in the decisionto continue or withdraw intensive care treatment. Despite not being involved,perhaps surprisingly, parents were satisfied with the decision-making process.This is consistent with other studies in neonatology, advanced cancer care andintensive care units, where the ideal of shared decision-making is not alwaysportrayed in the empirical reality. The question in this presentation focuseson how researchers should proceed when apparent bioethical ideals contradictwith anthropological observations. On the one hand, these discrepancies couldbe contingent on the context. Physicians could steer decisions towardstreatment without outlining or explaining alternatives. Clearly, then, lots ofimprovements are still to be gained in establishing a shared decision-makingapproach. On the other hand, some bioethicists have questioned whether themainstream bioethical approach to autonomy might lack the nuance of a complexempirical reality in which patients or surrogate decision-makers cannot and donot want to take part in the decision-making approach. It is part of ourresponsibility as bioethicists to critically reflect on and bridge normativeideals with diverging empirical realities.

FRI 10:45 am: Should the Law Permit Physician-Assisted Death for Dementia?(Rebecca Dresser)

As more of us live into our later years, more of us become susceptible toAlzheimer�s disease and other age-related dementias. Many people fear dementia,and some argue that physician-assisted death should be available to thoseseeking to avoid the indignity of life with dementia. The prospect oflegalizing assisted death for potential or actual dementia patients raisesdistinct issues. In this presentation, I will consider whether U.S. law shouldpermit physician-assisted death for: (1) at-risk individuals seeking to avoid apossible future with dementia; (2) individuals with mild or moderate dementia;and (3) individuals who make advance directives requesting assisted death ifthey develop dementia. I will describe concerns related to predictiveuncertainties, decision-making capacity, changes in personal interests, andactivation criteria for advance euthanasia directives. I will also examine thepractical effects of laws permitting dementia-based physician-assisted death inthe Netherlands and Belgium, as well as the ethical implications of those laws.

In what respects (if any) do surrogate decision-makers wrong patients byinsisting upon courses of action (1) that depart from medical recommendations,(2) that thereby expose patients to avoidable risks, and (3) that the patientsmight not have chosen themselves? While both the substituted judgment standardand the best interests standard of surrogate decision-making regard suchbehavior as aberrant on its face, I argue that neither standard alone nor bothtogether can account in all instances for the standards� shared intuition thatthere is something wrong about knowingly exposing patients to avoidable risksthat the patients might not have chosen themselves. I suggest that theincompleteness of the account offered by these standards is due to their closefocus on outcomes and to risk�s inherently uncertain contribution to outcomes.Albeit in different ways, both the substituted judgment standard and the bestinterests standard focus on outcomes: the substituted judgment standard focuseson securing a decisional outcome identical to what the patient would havesought, while the best interests standard focuses on the best available medicaloutcome. Neglected are the intellectual dispositions and habits of thesurrogate, what under ethical analysis we might call the surrogate�sintellectual virtues and vices. I propose a virtue-based supplement to thesubstituted judgment standard and best interests standard for surrogatedecision-makers.

Each year brings with it importantlegal developments related to bioethics. This panel will discuss the latestlegal trends of significance for ASBH members. This annual panel has been awell-attended and popular session. This year�s panel will be interdisciplinaryand diverse both in terms of topics covered under the law theme, and in termsof the speakers� geographic regions, areas of expertise, and institutionalaffiliations. In keeping with the conference theme, this year, the panelistswill address legal developments in areas with a range of bioethical concern,with complex and strongly held perspectives from left, right, and center with afocus on how bioethics has fared in courts, legislatures and administrativeagencies through their decisions and actions in bioethics-related law. Relevantrecent legal developments will include those affecting individuals, healthprofessionals, and populations at the state, federal, and international level.Panelists will cover thematic areas of interest to the diverse ASBH audienceand within their expertise, representing a breadth of key areas in law andbioethics. Major legal developments addressed include: - reproduction, assistedreproductive technologies, and issues concerning vulnerable populations, e.g.,individuals with disabilities (Panelist 1) - brain death (including unilateralwithdrawal of somatic support), futility, and informed consent/unwanted medicaltreatment (Panelist 2) - aid-in-dying/physician-assisted suicide, andwithdrawal and withholding of life-sustaining treatment (including DNR andPOLST orders) (Panelist 3) - public health law and government regulation ofbehavior (Moderator). All ASBH attendees are invited to discuss these emerginglegal trends.

In recent years, shared decision making has become the standard for medicaldecision making, with the goal of making treatment decisions that are medicallyappropriate and consistent with the patient�s values, goals, and preferences.Another perspective recognizes that when medically appropriate treatmentoptions that have the potential to detrimentally affect a patient�s quality oflife are being considered, the patient�s preferences are more heavilyconsidered. Following the shared decision making model becomes rather difficultwhen medical providers are confronted with the refusal of beneficial treatment(e.g., refusal of intubation while treating pneumonia and chronic obstructivepulmonary disease).

Ethicists usually address the value laden conflicts that arise when familiesrequest possibly non-beneficial treatment, but what should happen when theunusual case arises of a family setting limitations for beneficial treatmentbefore the medical providers? In our case, a family with complex dynamicsrequested limitations of treatment (removal of an external ventricular drain)that the team viewed as beneficial. The family�s request was informed by thepatient�s previously expressed views of not living with a disability. Theirgoal was to spare the patient from living with a quality of life he would findunacceptable because it would likely involve some level of disability.

Ultimately, our team decided to honor the family's request. In thispresentation, by closely examining the shared decision making model, we hope toclarify when it is ethically acceptable for the values of the patient tooutweigh what is medically beneficial to him.

Dying in America: Ethics in the Middle? Right to Life Right to Die The right ofself-determination, the right to refuse treatments, even the 'right to try' areall rather modern constructs created by fantastic advances in technology andinformation dissemination.Though seemingly disparate positions, the proponentsof each feel a strong moral obligation to preserve and promulgate their view toensure societal choice. The debate surrounds the finality of life and deathwhich creates urgency. It often involves surrogate decision makers whichheightens the emotion increases the complexity.Expressed preferences regardingend of life decisions both inside and outside of medical facilities are gainingtraction but have their limitations and are not universally recognized orutilized.The clinical ethics principles of autonomy, both of the patient and ofthe clinician, clash when requests for potentially inappropriate treatments arereceived.Is there middle ground or does the ethics community even belong in thecenter on these issues?A lively discussion of the current state of dying inAmerica, utilizing presentations by a seasoned Palliative Care clinician and anationally renowned attorney and author both experienced with these issues willinform and challenge the audience. Included will be a historical and personalperspective of the landmark Missouri legal case of Nancy Cruzan and thesubsequent constitutional imperative of self-determination. There will beexploration of the increasing longevity and shrinking caregiver support ratioswhich make the future of healthcare challenging to consider.

Physician aid in dying (PAD) is legal in six U.S. states and many others areconsidering implementation. We argue that bioethics programs have an obligationto be at the �center� of the public response to PAD enactment. The End of LifeOption Act (EOLOA) in California requires that we balance the values of choiceand self-determination with other considerations. Tensions are not new to thosewho routinely care for seriously ill patients. Death and dying has been centralto bioethics since its start. When California�s law passed, we asked: How canCalifornia�s bioethics centers promote thoughtful deliberation to createpatient-centered policies? In 2015, we organized an emergency conference tohelp health care institutions develop policies to guide response, addressingvarying degrees of participation, and managing conscientious objection. Duringthe proposed interactive workshop, we will describe the next phase of our�response� to legalization. Based on one year�s experience, we will report onour efforts, including reconvening the multidisciplinary stakeholders whoattended our original conference. Prior to the conference we will: survey keyhealth care organizations, including the development and administration of aprovider survey targeting physicians and social workers, often the key accesspoint for patients seeking assistance with dying; create a set of common dataelements to augment required reporting; and conduct and report the results ofan ethnographic study of 20 Californians who sought PAD, as reported by theirsurviving family members and professional caregivers. We argue that bioethicsmust become the moral �center� of discussion and debate.

Death by neurological criteria andrefusal of medical treatment by a pregnant patient are both complex ethicalissues. The case of Jahi McMath highlights the complexity of the former, withcompeting clinical claims, questions of unprofessional behavior by physicians,and judicial and legislative deliberations with potentially revolutionaryimplications. The latter raises the question of the moral value of the fetusand the degree to which a pregnant woman's right to refuse treatment may belimited, as codified by law in several states. When both issues are relevant toa specific case, though, ethical decision-making becomes markedly morecomplicated. This session will examine competing rights and responsibilitiestoward a pregnant patient who is suspected to be-or has been declared-dead byneurological criteria, through analysis of two cases. One took place in a statewhere the family requested discontinuation of treatment but this was notlegally permitted, prompting a comparison to the well-known case of MarliseMunoz in Texas. In the other case (in a different state), the family wished tocontinue the pregnancy with the hope of a healthy baby, prompting discussion ofwhether the patient should even be evaluated for brain death (both out ofconcern for the fetus's well-being as well for potential financial hardship forthe family if brain death were confirmed), how long to continue the pregnancyto maximize fetal well-being, and how organ donation figured into the treatmentplan (if at all). In both cases, clinical, ethical, and legal (both state andfederal) considerations will be addressed.

Despite increased provision of supportive interventions for infants andchildren with Trisomy 18, poor long term survival and considerable comorbiditycontinues to spur debate regarding which therapies are beneficial and should beoffered to these patients. Using a case, this session will explore the diverseviewpoints, roles, and responsibilities of parents and interprofessionalproviders within and between centers to coordinate and determine ethicallyappropriate care.The moderator�a neonatologist/ethicist�will introduce thecase: an infant with Trisomy 18 not offered surgical palliation for a heartlesion found to be more severe than anticipated. His parents wish to extend hislife as long as possible and bring him home, and must choose between discharge tohospice or surgery at another center. The first speaker� aneonatologist/bioethicist with expertise in values conflicts and shareddecision-making, will discuss changing approaches to Trisomy 18 care, families'perspectives on these children, how providers and parents view outcomesdifferently, and the conflict between goals of �going home� vs �tryingeverything.�The second speaker�a surgeon/ethicist, will weigh the obligationsof surgeons to offer or not offer operations they feel are non-indicated. Thisspeaker will discuss how to navigate conflicting perspectives from teams atmultiple institutions using competing frameworks for medical/qualitativefutility, and whether an operation not offered means 'ethically impermissible'or 'not possible.�The third speaker� a social worker/clinical ethicist� willdiscuss interdisciplinary disagreement between providers about the �right�course of action and external pressures on these decisions, including mediapublicity, parental support groups, and political influences.

As a matter of bioethics medicalfutility is a values judgment framed in the struggle of competing andoftentimes conflicting perceptions. The conflict over medical futility is anencounter between three competing authorities, patient-physician-institutionalor more globally patients as a group, the medical profession, and socioeconomicforces each desiring to exert autonomy. Ethical problems within the clinicalsetting continue to develop with increasing complexity and variation. Complexadaptive systems theory and evidence-based practice are utilized to understandgroup dynamics while maintaining quality care. This proposed conceptual modelemphasizes the patient-clinician-institution relationship identifying areas ofindependence and interdependence, based in assessing health literacy andcapacity, adopting applied clinical ethics in resolving conflict. The abilityof patients and families as consumers of healthcare to engage in a meaningfuldialogue with healthcare clinicians is fundamental to the decision-makingprocess and relies on accurate assessment of health literacy and capacity. Capacityis central to an operational definition of health literacy referring to anindividual�s inherent capabilities and their established skills. This capacityis influenced by familial customs and values, education, and prior experienceswith the healthcare system. This model capitalizes on the inherent strengths ofhuman capital (clinical staff) in promoting health literacy and maintaining therelational autonomy of patient-clinician-institution. The implementation ofthis conceptual model can help operationalize and be instrumental in,establishing and maintaining open lines of communication within themultidisciplinary team and furthering relations with patients and familyregarding end-of-life issues and treatment.

SUN 9:15 am: The Happy Demented Patient and the Law of End-of-LifeSurrogate Decision Making (Megan Wright)

When an incapacitated person needs medical treatment, surrogatedecision-makers, such as family members, physicians, or guardians, make thetreatment decision, which can be especially fraught in the end-of-life context.The surrogate decision-maker may follow directions indicated in theincapacitated person�s advance directive, if one has been completed, or may usethe �substituted judgment� or �best interests� standards of decision-making.

This presentation considers the case of the happy demented patient, who whenlegally competent directed that life-sustaining or life-saving treatment bewithheld should they ever develop dementia, later develops dementia, and thensubsequently contracts pneumonia, which presents the question of whether theyshould be given life-saving antibiotics. The presentation first reviews howphilosophers of wellbeing consider what is best for such a patient, and thenconsiders how the law of end-of-life surrogate decision-making applies to sucha case, demonstrating how existing legal guidance does not always lead to aclear answer about whether this hypothetical patient should be givenantibiotics. The presentation concludes with a proposal to apply disability law,which emphasizes capacity and supported decision-making, to the case of thehappy demented patient rather than existing end-of-life surrogatedecision-making law. Such an application would privilege capacity overcompetence, and dignity over autonomy, and would in the case of the happydemented patient likely lead to giving the patient antibiotics.

Shared decision making (SDM) is especially challenging�and important�in thehigh-stakes, fast-paced ICU. Panel members will present an array of newempirical data on SDM in the ICU that can inform best practice.We will delvedeeply into the messy details by questioning what SDM truly means in the ICUand explore alternative models. The panel includes clinicians and nonclinicianresearchers from five institutions. Panelists have empirical and conceptualexpertise in SDM and experience in clinical ethics consultation. - Aphilosopher will dissect what it means to share a decision, drawing fromempirical work on the preferred decisional role of advanced heart failurepatients. - A neonatologist will consider the role of decision-level factors (e.g.urgency, risk) in SDM preferences using surveys of parents of neonatal ICUpatients. - An adult intensivist will consider the role of the surrogate usingqualitative interviews of surrogates� self-perception of medicaldecision-making. - A pediatric intensivist will explore informed non-dissent,an underappreciated and underutilized model of SDM in the ICU. - A bioethicist(and former ICU nurse) will examine how to approach SDM in the setting ofunilateral clinician refusal, using data after implementation of a medicalcenter-wide DNAR policy. - Attendees will be invited to participate in amoderated general discussion. Together, we will consider how these empiricaldata and conceptual models can and should inform SDM at the bedside. Further,we will consider how the clinical ethics consultant can be most effective insupporting patients, families, and clinicians through the SDM process.

Responding to requests for so-called�inappropriate� medical interventions continues to be a significant challengefor both health care professionals and clinical ethicists. Recently, two groupsof scholars have attempted to clarify this concept, with an eye toward offeringpractical guidelines to aid health care professionals in handling these sortsof requests more effectively (Bosslet et al, 2015; Kon et al, 2016). There hasbeen a significant response to this work within the field of bioethics, withmany professional associations expressing their support for this work. Our ownlocal discussion, which has engaged with critical care nurses, intensivists,and Bioethics Committee members has been less enthusiastic. Utilizing clinicalcases for illustrative purposes, we argue for the following criticisms. First,we contend that identifying certain interventions as �strictly futile,� andrecommending against the provision of strictly futile interventions has almostno clinical impact, because the most ethically vexing cases for cliniciansrarely involve strictly futile interventions. Next, we claim that this dialoguefails to capture several reasonable aims of ICU-level care, and thereby failsto adequately capture what constitutes an appropriate intervention in the ICUsetting. Finally, we contend that this dialogue fails to acknowledge thesignificant role of patient values in determining what constitutes appropriatecare. Instead, the account of appropriate medical interventions being defendedhere is itself implicitly value-laden, and is thereby subject to the same sortsof concerns that led us to question the frequently discredited notion ofmedical futility.

There is a broad consensus that physicians should not offer treatment that isphysiologically ineffective or harmful, even when patients or their surrogatesrequest it. However, the boundaries between appropriate and inappropriatetreatment are often contested and unclear. Even when patients or theirsurrogates request clearly inappropriate treatment, it can be challenging howto communicate limits on care in a way that is compassionate and connects tothe patient's interests, values, and goals. How do we center care aroundpatient values when denying requests for inappropriate treatment? We presenttwo recent ethics consults that illustrate the challenges of these types ofdisputes. In one case, an elderly patient is resuscitated in the fieldfollowing cardiac arrest but remains comatose and vent dependent. Because of acervical spine injury, he cannot be safely trached. Family insists on ongoingvent support, while the ICU team feels prolonged oral intubation is inappropriate.In the second case, a young woman with complex psychiatry history insists ontotal parenteral nutrition despite negative GI workup. In both cases, there aredisputes about the patient's values and about the effectiveness of treatmentoptions. We discuss strategies for exploring patient interests, values, andgoals as distinct from patient preferences, as well as the importance of open,compassionate communication. We conclude with practical tips for resolvingdisputes about care in a way that honors patient values but that limits clearlyinappropriate treatment.